My endo thought that I may have RA or some other auto-immune disease, and insisted that I see a rheumatologist to get worked up properly. After waiting 3 months, I saw this new doc on Monday.
It was an interesting encounter. As I went over my health history, she refused to believe that I’m T2, said she didn’t give a fig about my weight, and that someone should have tested me for antibodies. That was unexpected; no one (other than myself) has ever questioned the diagnosis. She though going from an A1c of 5 to 10.7 in 5 months is a red flag. Pffft, that’s silly talk! Maybe I can tell my endo that my rheumy says I should be tested, start a little war between them.
She also encouraged me to go back to my gastroenterologist and ask about a biopsy to check for celiac. I had gone gluten-free before I knew that doing so can make the blood tests look negative. He was like “you could eat gluten for 6 months and then recheck” but I wasn’t wiling to purposefully make myself sick. If I work up the courage, I’ll talk with him again, and see if it would change anything. All my docs agree and tell me to not eat gluten and avoid cross-contamination anyway. shrug
Unfortunately for my anxiety (I’m terrified of docs and always expect them to tell me nothing is wrong and to stop bothering them), she wasn’t sure that I have RA. Not that I want it but I would like some relief from my worsening hand symptoms, been going on for 3 years… She sent me off with a script for a barrage of tests for RA, Hashimoto’s and Lupus. Bless her heart, she also gave me a medication for my hands, just in case it may help while we wait and figure out what’s wrong.
My next appt is on February 1st, and I’m trying to be patient and ignore my fears until then. I’m such a dork, more worried that they won’t find anything and tell me to just deal with it than concerned about getting a diagnosis…
RA is a tough condition to diagnose and your doctor was right to send you to a Rheumatologist for a determination. She was also right to test on a number of fronts. Since there is no one blood test for RA, it is often a matter of the sum of the evidence including the things that can safely be ruled out.
It would be uncommon for only your hands to be involved in RA. Yes, small joints are very susceptible to RA, but usually, it is a multitude of symptoms plus blood work that will tell the tale. Like the rheumatologist rightly inferred it is important especially in women to test for Lupus as well as a number of other autoimmune diseases.
The good news is that modern medications to treat RA are amazing, but they are also a bit hit and miss. Yes it can be a very difficult condition to manage. But if caught early and treated aggressively it does far less harm than than even 25 years ago.
The other good news is that if you have RA, there are some great sources of information and online communities to help. If it is found you have RA. please check back with me and I will be glad to point you in some positive directions. I hope you do not join the RA club, but if you do, remember it is very different today than in the past. There is much hope.
Hi Daytona,
to echo others, it is a hard disease to diagnose. Sometimes the symptoms are there but the blood doesn’t support it…sounds like your Rhumy is really good, treating the symptoms, some don’t and we can spend many months in pain. …Once you have an auto-immune they should suspect others as the body doesn’t just ‘stop’ attacking itself…it’s normal to have multiples and with the RA and Celiac type one diabetes should be suspected, by testing they are doing all of the right things …Don’t worry you can handle it just keep taking it in your stride …
When I had my blood drawn, I requested that the lab results be sent to me. Just got them this morning though I don’t expect to discuss them with the rheumy until Feb 1st.
It came back positive for one antibody (ANA IFA, nucleolar pattern, titer 1:60), but not high enough on others (DNA DS 3 IU/mL, Rheumatoid Factor 9 IU/ml) so based on my reading it’s a toss up as to what she’ll think.
On the plus side my c-reative protein and my Vit-D are now just barely in range. So I’m counting this as a win. At least things are moving in the right direction!
Hi Daytona,
You will discuss that result with your Dr, which is appropriate as they have been to school and will understand more about it than those of us who have not. I would ask for the testing for LADA (bunch of side tests, GAD, IA, IAA etc)
That said, we have the same pattern and my levels were about the same as yours when I presented. Whatever the outcome, and everyone is different - I can tell you that I work every day (I work 10-12 hours a day and I’m running around) and none of my Dx has stopped me yet. I may be in pain, I may be nauseated, my sugars may be wonky and I may be tired but I carry on…I tell you this, so that you understand that whatever it is (or isn’t) you can be normal and that was the hardest thing for me to understand and accept…I may give myself more time to get to the next meeting but I still get there…
Yup! I spent a lot of time finding a good doctor and I plan on making full use of her expertise. I just like to have copies, as I see lots of docs and they always want to see what the other one did. It’s so much easier to make copies from your own stash, than request them every time they are needed! Then once I have copies… I am an engineer and can’t help but try to learn more about what it says.
I am determined to not let whatever this is sideline me, and can’t wait to get back into things that my symptoms has forced me to give up. Once I know what I’m dealing with I figure it should be easier to not only get proper care, but understand how to best manage things day to day. For example, with some diseases, even if you’re tired, pushing through and doing stuff anyway can help give you a second boost of energy, while with others, pushing yourself when you are pooped can lead to big setbacks. It would help to know which I’m dealing with!
Welp, the doctor said that based on my blood tests, she can’t make a diagnosis other than “eventually one of your labs will get worse and then we’ll know what it is”. She said that she believes that I’m in pain, and she’ll do what she can to treat it until we figure things out.
She prescribed two medications. One is Plaquenil, and she said would take a few months to see if it helps or not. The other is Limbrel, which may help with pain while being easier on my stomach than NSAIDs.
I’m just glad that she didn’t kick me to the curb since the blood tests weren’t conclusive.
Hi Daytona, I feel your pain (literally as well as figuratively). I have sero-negative RA, as well as Sjogregn’s Syndrome. It took two + painful, tearful, frustrating and kicked-to-the curb years to be diagnosed. SOMETHING was wrong! Because my condition(s) do not show up in blood tests, I was told I was being hysterical, it couldn’t be as bad as I said, it was just simple Osteo-artheritis, take aspirin and go home. When I finally got to see a rheumatologist, he said it MIGHT be something, but we would have to wait until it showed up in tests. One day to shut me up he sent me for x-rays and for an MRI and called me three days later because results showed severely eroding joints in the hands I was complaining about! He still didn’t treat it agressively. Testing from a visit he sent me to at Johns Hopkins finally confirmed RA and Sjogregn’s. After that visit, when I saw him next, and mentioned RA, he said “you don’t have RA, we don’t know what you have.” I found a new doctor. I have since received new treatments, and found relief from the symptoms and pain. Hang in there, I am so sorry, it can sometimes be a very long and frustrating road. A friend with Celiac Disease had a very similar story.
If you are going to be taking Plaquenil, did the doctor have you call your ophthalmologist for baseline retinal tests. I took Plaquenil for a while and was required to have extensive eye testing before beginning to take it. These are different tests than I have for my annual exam relating to diabetes.
My ophthalmologist indicated that eye problems are rare on Plaquenil and are related to dose and duration of taking the med. But he insisted on the baseline tests.
I used Plaquenil for a while because of an inflammatory skin condition. Initially it was prescribed by my dermatologist and then by my rheumatologist. I had significant digestive issues from Plaquenil.
RA is notoriously difficult to diagnose and treat. When I was diagnosed my RA factors were off the chart, which in some ways was fortunate, I hope you can avoid being diagnosed, as it is a difficult condition.
It is important to recognize that only a rheumatologist is qualified to make the diagnosis. Keep seeing her, and perhaps things will be more clear in the future. Also do get an eye exam. It is very rare but Plaquenil can contribute to eye issues. Mixing potential eye issues with diabetes can create other issues. Best to get a baseline and do periodic testing.
Oh goodness, thank you for mentioning this! My doctor did ask if I regularly see an eye doctor but didn’t mention getting a baseline. I was already in search of a ophthalmologist, as I’ve only seen optometrists before, and I will make sure to get in right away and let them know that I will be starting this drug before I fill the script.
If you don’t mind sharing, what digestive problems did you run into with Plaquenil? I already have GERD, delayed emptying from the antacids and what may be celiac (or at the very least near constant diarrhea). She picked this because she said that it wouldn’t mess further with my digestion…
My sister has RA and Sjorgens, she’s 15 years older than me and so far has been a near perfect look into my health future (minus the diabetes). Having seen what she has gone through and lost, I would do anything to not have this as well, but also know from her experience that catching things early helps a lot.
Thanks for the encouragement to keep seeing the rheumy even though I don’t have a good “reason”, other than vague test results. It has been tempting to be like “oh well if no one else thinks that there’s a problem, I’ll just ignore it too then” (I have doctor issues).
I think your sister will agree that RA is a different disease today then when she was likely diagnosed. I was Dx’d in 2000 and I went immediately to a biologic agent which is not nice to take and is a hassle but it has forestalled many of the issues those of an earlier age dealt with.
I do think there are significant hurdles to overcome. I am using my 7th biologic medication now and no they do not all work and yes there are few tests to predict success, But they truly are wonder drugs. When they hit correctly they are wonderful. I hope you can avoid RA and I hope your sister is faring well.
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At least things are moving in the right direction!
